The disease specific module was launched February 2022 and is the work of the vertical theme Achondroplasia.
Want to start using the module? Get access to the Core registry here. After entering the patient in the Core Registry, the Achondroplasia module appears automatically and is ready to use.
If you have questions or interest in joining the working group, please contact us on EuRR_Bone@lumc.nl
The full data dictionary can be downloaded here when available.
Do not forget for all bone conditions EQ5D and mobility should be assessed (either by clinician or patient with access) yearly. You will need to set those within the general bone dysplasia module
Tools used in the module :
Brief Pain Inventory in adults (coming soon in 10 languages)